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Post Info TOPIC: Treatment and job performance
Kellyw


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RE: Treatment and job performance
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I work in a hospital. I told our charge nurse first and a few friends there. I could care less about stigmas and attitudes. I didn't care who knew but at the same time didn't tell everyone. I felt it was important for people to know since I figured I was going to be "different" and I would rather they know I was sick than just wonder and gossip. I am also active in my church and felt I should let go of a few activities there. I didn't want to committ to things and not be able to follow through.

I think before I started treatment and in the first weeks the hardest part was not knowing what I would be able to do so I really held off any plans . The nurses in the GI lab painted a pretty horrible picture and suggested i consider disability. That scared me alot. For me it is not nearly as bad as advertised. I am glad I put off something's and could probably have followed thru on others.

As people here have repeatedly said everyone is amazingly different in their response to treatment.

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Kelly 2b dx 8/11. Tx begun 12/30/11. Apparently had it for decades.
andrzej


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Caryn wrote:

Sed3, I've thought about that! I don't know what else to say. I have thought about telling him what I have said, then letting him know it is NOT HIV. People are smart and you just need a few words to type in to google and they can figure it out.  I just really am having a hard time with this. I am not sure the truth is a good plan.

 

Don't say anything in terms of your condition. Just state you have a condition that require treatment which you do not wish to disclose the actual condition. Inform them that it may have adverse effects to treatment and would just like to inform them. Then you can ask them how to proceed. That's what I did



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Caryn


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Sed3: Actually, your post below about what you say when people ask is pretty crafty.  I may have to use that!



__________________

1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
Caryn


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Sed3, I've thought about that! I don't know what else to say. I have thought about telling him what I have said, then letting him know it is NOT HIV. People are smart and you just need a few words to type in to google and they can figure it out.  I just really am having a hard time with this. I am not sure the truth is a good plan.



__________________

1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
Sed3


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Don't be crazy Caryn. If anyone can benefit from these posts, on topic or not, it's great!

You do realize that your manager will likely conclude that you have HIV, if that's an issue for you.

__________________

Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012

8 weeks Incivik - stopped early due to rash.

Continuing Pegasys and Ribavirin until January 2013 - 48 weeks

Undetectable from week 4 --> present
Caryn


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Thanks for the responses. This has been crazy as far as emotions.  I am just trying to figure it all out. I would love to have as much information as possible before I start treatment.  I have decided what I will probably do is contact HR and then let my manager know that I have a blood disease that requires chemo like therapy and ask him to respect my privacy. He can let the rest of the team know that I am out on leave and will be back.  This is a compilation of all of the answers to my posts, so thanks everyone!

I also must apologize as I have obvioulsy taken over someones original post. I do apologize. 



__________________

1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
LanaiSurferGirl


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keep in mind that you only have to tell HR the actual reason that you are having problems.  Check into if your company has disability insurance you may be eligable for and if not your state should have it...taken out of your paycheck.  The doctor needs to fill out a form and you will be good to go, even if you go down to part time the disability insurance will make up for some lost wages because of dropping your hours.  Good luck! :)



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geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
Isiscat2011


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Caryn:  Keep in mind that my side effects were on the severe side, and while it seems that most people will experience some side effects, most people's bodies will be somewhat more receptive to the drugs than mine was.  So, while mine is not a worst case scenario (a worst case scenario being heart attack or death) it is likely worse than yours will be.  This is not a complete description but I will try to hit the most significant side effects.

Within a day or two after beginning tx I got a rash over 90% of my body (everthing except part of my face) that resembled a sunburn on top of measles.  The rash was accompanied by itching, blisters on my fingers and palms, and some difficulty swallowing.   During the first week I experienced intense leg pain and cognitive impairment which included disorientation and difficulty speaking.  I actually sounded drunk when I spoke.  The nausea started immediately and lasted throughout tx.  The rash/itching subsided enough within a couple of days to persuade my doctor that I could continue tx (with the help of many hours of aveeno baths, oatmeal and topical benadryl applications and oral claritin).  The leg pain subsided but I felt far from normal physically or mentally. 

Over the next couple of weeks it was rough but my body appeared to be adjusting and it all seemed doable.  I vomitted a couple of times, had diarrhea, butt burning, fatigue, and the usual, but I did not feel I was in any danger. 

Next, I had some vision problems but those too subsided.  My blood problems had surfaced within a couple of weeks but it wasn't until about week 5 that doc reduced my interferon.  By blood problems I mean seriously reduced platelets and hemoglobin.  By now I was feeling very weak and dizzy and having a hard time even walking across the room.  My gums and nose were bleeding but not heavily. By now I had received my 4 week UND, and the pronouncement that I was a rapid responder.  With that bit of encouragement I was determined to crawl through glass to reach the finish line. 

By week 7 or 8 my blood problems became increasingly worse and my riba was reduced.  I believe it was about this time that I noticed my face was swelling--alot.  I had also been having some trouble swallowing and felt that I was not drinking enough water, although I was trying. I told my doc about the worsening shortness of breath and chest pains and for the second time he suggested that the risks might be outweighing the possible benefits and that I needed to seriously consider stopping tx.  Instead, we agreed that I would see a cardiologist immediately and that I would have a blood transfusion.  He would not agree to prescribe procrit, however, due to the number and severity of my side effects.  Mentally, I felt that I was in an alternate reality. 

The last 2 weeks of my tx things only got worse.  All of the above side effects seemed to be worsening at an increased pace. By week 10, I ended up in the hospital where I was given 2 pints of blood.  The first pint made me feel better, but I had an adverse reaction to the second and ended up feeling worse.  At this point my doc told me it was simply time to stop.

I am now about 3 weeks post tx and, although I am no longer taking the drugs, my hgb is dropping again and in the past week my platelets have dropped 32 points.  I am getting blood tests weekly and now they are checking stool samples for signs of internal bleeding.  More tests are likely. I am still having some of the side effects of tx, but the ones that concern me most, in addition to the blood values going down instead of up, are the shortness of breath and the chest pains.  In short, I am not out of the woods yet, but hopefully things will improve instead of getting worse.

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Caryn


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This is all very good information. Thank you all very much.  I still have some time to figure it all out.  

Isiscat, I agree 100% about the issue of advocacy. I already feel like I would like to speak out to people about hep c as well.  There are so many things that I could have done differently (after diagnosis) that could have helped me in the long run.

Also Isiscat, do you mind me asking what side effects you endured during your treatment??  I will be on triple therapy with Incivek. I know everyone is different in how they respond, but a fore warning would be nice! 

Thanks!

 



__________________

1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
Isiscat2011


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I think it is a question of using good common sense.  If it may effect your ability to earn a living then think twice before blurting out personal information of any kind.  Health problems scare people and that goes double for infectious diseases.

I feel very lucky that I have my own business and, therefore, do not need to discuss it much in my work life.  I have told my work mates (who are very close in a small law practice) and who are holding down the fort brilliantly.

In my personal life I feel more open about it but not with everyone. Obviously, anyone close who will be a support system for us deserves complete honesty.  I have told my entire family and only a couple of other people who I trust and care about.  Anyone else is told on a need- to- know basis.

Then there is the issue of advocacy.  I am feeing somewhat obligated to speak out about this in some manner in order to help improve the situation in the future. Must be my naturally big mouth doing the thinking here.   evileye



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
andrzej


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Caryn wrote:

That is great information! Thanks so much!  I do not work for a very large company so I there is not a health dept. to filter information to HR.  I really feel as though I may not be able to work. I am very active at work. I move around quite a bit and I am inside and outside...the Texas heat is NOT pleasant. I also work with the public and I am in a sales environment. If you are not feeling great, then it is hard to perform your job to the companies expectations. Were you able to work a full 8 hour day? What type of work do you do?

 Actually did much better than expected. Basically my doctors recommendation is that I do not work more than a normal week (40 hours) We stuck with this. I work in IT and it's a very stressful job where you are pushed to work long hours if needed, sometimes even if not. This helped greatly, If I had to work more, I may have been able to handle the hours, but the stress would have made thing difficult. I never ever was pressed to tell anyone the exact condition. 



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Sed3


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Aside from a few people at work who know, when people ask why I'm taking leave, I say:

"Think of the worst thing imaginable. Got it? It's not that."

__________________

Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012

8 weeks Incivik - stopped early due to rash.

Continuing Pegasys and Ribavirin until January 2013 - 48 weeks

Undetectable from week 4 --> present
Shep


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I didn't have any trouble with telling some but not all of my co-workers about my situation. I am very fortunate that I work with a small tight group and we call ourselves a family--dysfunctional. Been working with most of this people between 10-15 years. I have great support and it really has made it easier to function knowing that I don't have to hide what is going on with me. I do feel like I am one of the lucky ones--I have good support, sx have been really manageable and I have been able to rest and take care of myself. I wish everyone could be a comfortable and supportive situation.
Shep

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
Phil G


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I remain anonymous about Hep C at work, as well as some other things. It's none of my co-workers business. But I have no problem telling my boss if the need arises. The medical dept does know about it and the other things. They have been flagging my liver enzymes for 15 years. I haven't told them about tx, but I'm thinking I should and will, as it will grease the wheels if conditions change. Right now, the sx are manageable and haven't missed work except for a couple of early afternoons. I am fortunate that virtually all of my work is on the computer, Live Meetings, and conference calls, and I can do this from home almost seamlessly, other than more distractions.



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
Caryn


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That is great information! Thanks so much!  I do not work for a very large company so I there is not a health dept. to filter information to HR.  I really feel as though I may not be able to work. I am very active at work. I move around quite a bit and I am inside and outside...the Texas heat is NOT pleasant. I also work with the public and I am in a sales environment. If you are not feeling great, then it is hard to perform your job to the companies expectations. Were you able to work a full 8 hour day? What type of work do you do?



__________________

1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
andrzej


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Caryn wrote:

Is everyone being honest about the hep c at work? I am seriously having issues telling anyone at work. I do NOT feel like there would be much support. I work in a cut throat environment and people use whatever they can to get rid of the competition.

 Not sure how big the place you work is, the bigger the better as they would want to protect themselves against lawsuits, but you should have a right to privacy. In my case, my company has a special department to handle health situations. My doctor faxed them a form explaining my condition and treatment and his recommendations. That office in turn filtered and send off their recommnedation to HR, who in turn, just told my management what I can or cannot do.

I would suggest you go to your management or HR department, let them know you are going through a medical condition you that you would prefer not to disclose, but that treatment will be required and may limit your work. In the United States, depending on the severity of your response to treatment, you may be covered under the American Disability Act. I was concerned about work and did some research, what convinced me to disclose was this link: http://askjan.org/media/hep.html



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alohaKim


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I haven't told anyone outside my family. I don't plan to, either. It's none of their business and in my experience Hep C has such a stigma attached to it. It's a personal thing for me. I think everyone has to make their own choice as to who they share this journey with.

__________________

Genotype 1a, non responder to Peg/Riba in 2005. Started triple therapy 1-27-12 with Victrelis.  UNDETECTABLE as of 8wk labs (after 4 weeks of Victrelis) 4-3-12. UND at week 8, 12, 16 & 20 of tx. Completed triple therapy Oct 2012. relapsed 10/2012
Caryn


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Is everyone being honest about the hep c at work? I am seriously having issues telling anyone at work. I do NOT feel like there would be much support. I work in a cut throat environment and people use whatever they can to get rid of the competition.

__________________

1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
AlexNY


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same exact here



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I'm Alex. Diagnosed with hep c 12 years ago. Genotype 1a. Started tx on 1/31/12 Ironically, I'm an RN. VL 15.9 (!) mil.  Wk 5, 8, 12, 16, 20 - all UND :)
Isiscat2011


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Hi Sed3:  You are doing the right thing to take sick leave.  I am also an attorney and former public defender (I remember the case loads well) and you are doing your clients, yourself, and your colleagues a service to make those arrangements now. 

There is simply no way to know how bad the side effects will become for each person but most people seem to experience them getting worse (to varying degrees) than they are in the beginning.  Best of luck.



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
andrzej


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Sed3, good for you, you did the right thing in taking the time off. Hopefully, like me, you'll find that you feel much better when finishing the Incivik. I didn't do it during the Incivik but afterwards I also started drinking V8, seems to help.



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kiwi


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i work with at risk youth as well. i get home and i need a sleep. i took a sick day today. finally. just needed time for me...

i manage, but its hard... havent told my work so far, but if things get really rough i will (who am i kidding its rough already haha)

seriously tho, i decided today, that sick was the new normal, i just plug along and have to make do... whats the alternative eh.. ?

 



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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
Sed3


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Thanks everyone! I am on full salary for the first 3 months of sick leave, and I'm only "planning" on being out until I'm done with the teleprevir. If the side effects ease up, I'll go back to work earlier. I will have no problem from mgmt taking the leave. It just sucks for my colleagues who have to cover for me.

I'm drinking 60-80 ounces of water daily, and always have my water bottle with me. And my fiancee has cats, so there's always plenty of Zyrtec-D around. I'm putting off any wedding plans until I'm better.

As I told my GI, I cannot push myself to where I'm uncomfortable or feeling worse than I do.

And andrzej, I'm turning 50 on April 28, a Saturday, and have a party planned with 2 friends also turning 50. I'll be there if I have to be wheeled in on a hospital bed!

__________________

Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012

8 weeks Incivik - stopped early due to rash.

Continuing Pegasys and Ribavirin until January 2013 - 48 weeks

Undetectable from week 4 --> present
krowdog


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Incivek is Telaprevir

Victrellis is Boceprevir.

Brad



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(Geno 1a, Incivek Triple Tx, 6 month post TX - 9/20/2012 = SVR!!!)
andrzej


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As others say, side effects vary from person to person. This is my second time so I was better prepared. My biggest concern was work performance. To handle that, I too made sure I let them know. My doctor send them a form to explain my condition and the fact that my work should be limited to a regular work week, no long hours. That's the best thing I did, it gave me a piece of mind concerning work. Since it was all official and documented, I have far less concerns and am able to handle my symptoms. For now, I'm pretty much the same way my work place is, selfish, worry about number 1 first. Only thing I could suggest, make sure the fact that you let work know is documented. I didn't do telaprevir, I did incivik, but found that things got far better after I quit incivik and just had to do the riba/pegasys combo. Actually got 4 days of skiing in last week in VT, when I celebrated my 55th bday. Good luck.

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Shep


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Everyone is different. So far I feel really lucky and have been able to continue to work every day. I teach at-risk high school students who are a pretty challenging bunch. Some days are harder than others w/wo tx. I have noticed that I am more tired and a little less tolerant than normal. My principal called me grumpy today and I agree. I was grumpy today. But I am hanging in there. Of course I am only starting week 8 with just barely 3 weeks of all three meds. I have also continued to exercise a couple of times a week. Sleep makes all the difference for me.
Good luck to you!
Shep

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
Sed3


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Thanks Kim - I have no idea how you do it. Of course, I'm not in the physical condition you are!

__________________

Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012

8 weeks Incivik - stopped early due to rash.

Continuing Pegasys and Ribavirin until January 2013 - 48 weeks

Undetectable from week 4 --> present
alohaKim


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I'm working (I teach sailing on the water) and going about my normal routine. It's a bit more difficult, but so far I'm managing. I still jog 4-5 miles a couple times a week. I have two kids with a full extracurricular schedule so I'm always on the go, taking someone to gymnastics or scouts, etc. I do have to admit that many nights I cannot bring myself to make dinner once I have made it home for the evening. The hubby & kids are capable of fending for themselves, though. Thank goodness! In my experience (and everyone is different) the FIRST WEEK was the worst. Hopefully you start feeling a little better with time. aloha

__________________

Genotype 1a, non responder to Peg/Riba in 2005. Started triple therapy 1-27-12 with Victrelis.  UNDETECTABLE as of 8wk labs (after 4 weeks of Victrelis) 4-3-12. UND at week 8, 12, 16 & 20 of tx. Completed triple therapy Oct 2012. relapsed 10/2012
Sed3


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Thanks Captain!

I've decided that I'm kidding myself if I think I can work. There's no way. Sick leave it is!

__________________

Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012

8 weeks Incivik - stopped early due to rash.

Continuing Pegasys and Ribavirin until January 2013 - 48 weeks

Undetectable from week 4 --> present
krowdog


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Hi Sed3, and Kim.

I am just finishing week 17 of the incivek triple TX. 

Sed3 - I have been able to work the whole time, a busy, on my feet job.  My first week or so was like yours, but the pegasys gets easier.  I haven't had emotional problems or anger, I just get grumpy sometimes (probably just because I don't feel that great on some days, due to TX).  I found the telaprivir  VERY annoying, but it didn't interfere with my work much.  Be SURE you stay ahead of the rash and itching.  I swear the ceterizine (generic for zyrtec) was a huge help.  I ended up taking a once-a-day pill, twice daily.  And of course you heard, "Drink lots of water!"  Every time I slipped up on that, all my side effects went to hell, even the rash.  The good thing is, the Incivek is over before you know it, then things seem a lot easier.

Kim - I was able to easily do aerobic exercise too, especially at the beginning of TX.  LSD (long, slow, distance) seemed to work best.  I can still do that, but as the hemoglobin drops, so does the anaerobic threshhold.  For the last month, I have suspended those workouts.  I am just watching my diet more carefully now.  After my last good workout, I found my recovery time was over 2 days, and I felt terrible.  I have decided just rest my body for the 2 months of TX I have left. 

Oh yeah, like Shep said, sleep has been a big help.  I went from 6 1/2 hours a day to 8 or sometimes 9, and I felt way better.  I was amazed at how much it helped!

I wish you both a speedy "undetectable", and a smooth TX!

Brad



-- Edited by krowdog on Wednesday 15th of February 2012 03:27:05 AM

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(Geno 1a, Incivek Triple Tx, 6 month post TX - 9/20/2012 = SVR!!!)
Captain Over


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Well, everyone is different, but for me the mental and emotional side effects were the worst. Physically, I did very well, continuing my sessions at the gym, never nauseous, seldom even took a nap, but my temper was fierce, my tolerance of other people very low, and my concentration was poor. I was never sure what was going to come out of my mouth. I hope you have a better time of it, but it would have been very difficult for me to work with the public much of the time.

As I said, though, everyone is different, and some days/weeks are better than others. Many folks do manage to keep working . . . I wish you much luck.



__________________

Genome 1A, diagnosed in 2010, probably from blood transfusion in 1985. VL 1.5-7.0  Biopsy 2/2    Began clinical trial for Telaprevir 5/2011. Week 4 - UND and liver enzymes in  normal range. Week 12 UND.  Hope to finish tx 10-26-11
Sed3


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Hi - I'm 49 years old and 4 days into treatment:  ribasphere, telaprevir, pegasys.  Genotype 1B.  My concentration is shot, and I feel like I have a constant low-grade flu without the fever.  No energy at all.

I'm a public defender in Brooklyn, and I go to trial, work arraignment shifts for 8 hours, and do lawyer stuff.  I've told my supervisors everything, and given them info on treatment and side effects. 

I think the side effects will, if anything, get worse.  I am going to ask for a modification of my job duties, which will be difficult for them to do and, more importantly, will impact my colleagues.

Do you think the side effects will get worse?  Any advice or words of wisdom is greatly appreciated.

Thanks! 



-- Edited by Sed3 on Tuesday 14th of February 2012 12:35:36 AM

__________________

Type 1B - Unknown for 30 years, diagnosed September 2011, started treatment February 2012

8 weeks Incivik - stopped early due to rash.

Continuing Pegasys and Ribavirin until January 2013 - 48 weeks

Undetectable from week 4 --> present
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